Make It Clear Campaign - National Institute for Health Research

Make it clear: the public are important to research
excellence
8th Annual Trainees Meeting, Leeds, 10th November 2014
Simon Denegri, NIHR National Director for Patients and the Public
and Chair, INVOLVE (UK)
Why would you set off on a voyage knowing you
only have half the knowledge important to your
journey?
NIHR leadership in public involvement in research
• Core principle of National Institute for
Health Research (NIHR)
• Clear expectation set with research
community that it is important to research
excellence
• £ Investment and practical
support
• Partnership approach
www.invo.org.uk
“I have always taken the view that public
involvement in research should be the rule not
the exception.”
Professor Dame Sally Davies
Chief Medical Officer (CMO)
Improving the quality of what we do
‘Only 9% of patients wanted more research on
drugs, yet over 80% of randomised controlled
trials in patients with osteoarthritis of the knee
were drug evaluations.’
‘Relations between the agendas of the research community and the research
consumer’ Tallon et al, Lancet 2000 as cited by
Iain Chalmers and Paul Glasziou, The Lancet, 2009
Setting research priorities
http://www.netscc.ac.uk/news/item/08042013.asp
Or half a crew…….?
“I don’t actually think of the patients who work with us
as PPI members: they’re colleagues, they’re people with
good ideas. To me, they’re part of the team like the
statistician or the qualitative researcher or the clinician.
I don’t see a boundary. Patient and public involvement
is essential, integral and natural to what we do.”
Professor Hywel Williams
Professor of Dermato-Epidemiology and Director,
Centre of Evidence-Based Dermatology, University of Nottingham
Increasing effectiveness and efficiency
‘The aim of patient and public involvement
is to improve the quality, feasibility and translational value of
research...[This] is the first time
we can see that patient involvement is linked to higher likelihood
of reaching recruitment target – and as a result, study success.’
Professor Til Wykes, Director, MHRN
‘Patient involvement in research boosts success,’
The Guardian, 16/09/13
Paper reference: Ennis, L. et al. ‘Impact of patient involvement
in mental health research: longitudinal study’ British Journal of Psychiatry
(Sept 2013) doi: 10.1192/bjp.bp.112.119818
Design
Ensuring public confidence
• 77% of people said that
knowing a Research Ethics
Committee had reviewed a
study would increase their
confidence in it.
• 44% of respondents thought
that involving patients….would
increase their confidence in
the study.
Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/patientinvolvement-increases-public-confidence-healthresearch/#sthash.x3fCMNWj.dpuf
http://www.rphr.org.uk/
Putting the public together with research and
innovation is the way to ensure the NHS meets
future challenges
‘We stand on the cusp of a revolution in the role that
patients – and also communities – will play in their own
health and care. Harnessing what I’ve called this
renewable energy is potentially the make-it or break-it
difference between the NHS being sustainable – or not.’
Simon Stevens, NHS CEO, NHS Confederation Annual
Conference, June 2014
The public want to help so why shut the door on
them…..
“If I can be part of [the trial] it is a good thing.
Without the volunteers they can’t progress this
forward.”
Ruth Atkins
NHS employee, mum and Ebola vaccine clinical trial participant
The public and research
1000
600,000
3,000,000
11.2 Million
89% of people are willing to
take part in research
3% of people would not take part in a clinical trial
From willing to active patients
Public appetite
Patient experience
• 82 per cent of people believe it is
important for the NHS to offer
opportunities to take part in
healthcare research.
• 3% said they would never take
part in a clinical research study.
• National Cancer Patient
Experience Survey
2012/2013/2014
– 1 in 3 patients had a
discussion about research
with a health professional
• Discussion much less likely if
happening at all for patients with
other conditions (i.e. 1 in 5 for
type 1 diabetes)
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013
NIHR Clinical Research Networks
Survey Oct 2014
• Over 70% of patients look for
information about clinical trials
ecancer 5 235 2011 ‘Information
needs of cancer patients’
The baked beans test
“Some people sit in a bath of baked beans or run
a marathon. For me, I just thought ‘if not me
then who?’ “It’s nice to be part of it and it gives
you a way to help.”
Sheridan Edward
Opera singer, Ebola vaccine clinical
trial volunteer on standby!
Writing and using plain English
summaries
Background
• Good quality plain English summaries essential to
public understanding and involvement
• Beginning 14 May 2014 a good quality plain English
summary is a requirement of NIHR funding.
• Approach developed by INVOLVE on behalf of NIHR
• Reflected in supporting guidance and processes
• Work will be assessed in 12 – 18 months
A plain English summary is important for everybody so they can find out
about and understand your research :
• all reviewers use this summary to inform their review of funding
applications
• summaries of funded research are made publicly available on NIHR,
Health Research Authority (HRA) and other research websites to
inform the public and researchers
• patient information sheets and consent forms require information in
plain English
• Clinical Research Network portfolio and UK Clinical Trials Gateway
• NIHR journal, newsletters,
websites, social media, charities
What makes a good quality plain
English summary?
• it is clear, easy to read and is as jargon free as
possible
• it provides an overview of the entire research study
that readers can understand straight away.
Simple rules
•
•
•
•
•
•
consider your audience and what they need
avoid jargon and technical terms
keep sentences short
use everyday English
break up text for example use bullets
think about structure and order of text
Getting your summary right now….?
• will save you time later.
• is a foundation on which you can build and adapt
as your research develops.
• Will help you secure your funding
(If it is felt that a plain English summary is not clear
and of a good quality when you apply for NIHR
funding then you may be required to amend your
summary prior to final funding approval)
Further information
Visit the NIHR ‘make it clear’ webpage to find
out more
www.involve.nihr.ac.uk/makeitclear
or contact the NIHR Research Design Service
www.rds.nihr.ac.uk/
Questions
[email protected]
Twitter: @SDenegri
Blog: http://simondenegri.com/
involvementlastminute.com